Evaluation of a High School Peer Group Intervention for At-Risk Youth

The purpose of this paper is to examine the effectiveness of Reconnecting Youth, a prevention program for at-risk high school youth. Data are from a large, independently evaluated effectiveness trial in two diverse urban school districts. A total of 1,218 students participated; 50% were male; average age was 15. We tested whether positive efficacy trial effects could be replicated, and whether any negative behavioral effects occur when clustering high-risk youth. Although mixed program effects were observed at immediate post-intervention, only negative effects were found at 6-month follow-up. These effects included less optimal scores on measures of GPA, Anger, School Connectedness, Conventional Peer Bonding, and Peer High-Risk Behaviors. Overall, we found little support for the use of this social-influence—model intervention aimed at increasing school connectedness for high-risk youth. Further, this study provides evidence that clustering high-risk youth in preventive interventions has the potential for iatrogenic effects.     

Genetic Counseling for Fragile X Syndrome: Updated Recommendations of the National Society of Genetic Counselors

These recommendations describe the minimum standard criteria for genetic counseling and testing of individuals and families with fragile X syndrome, as well as carriers and potential carriers of a fragile X mutation. The original guidelines (published in 2000) have been revised, replacing a stratified pre- and full mutation model of fragile X syndrome with one based on a continuum of gene effects across the full spectrum of FMR1 CGG trinucleotide repeat expansion. This document reviews the molecular genetics of fragile X syndrome, clinical phenotype (including the spectrum of premature ovarian failure and fragile X-associated tremor-ataxia syndrome), indications for genetic testing and interpretation of results, risks of transmission, family planning options, psychosocial issues, and references for professional and patient resources. These recommendations are the opinions of a multicenter working group of genetic counselors with expertise in fragile X syndrome genetic counseling, and they are based on clinical experience, review of pertinent English language articles, and reports of expert committees. These recommendations should not be construed as dictating an exclusive course of management, nor does use of such recommendations guarantee a particular outcome. The professional judgment of a health care provider, familiar with the facts and circumstances of a specific case, will always supersede these recommendations.     

Assessment of the Use and Feasibility of Video to Supplement the Genetic Counseling Process: A Cancer Genetic Counseling Perspective

Cancer genetic counselors use a variety of teaching modalities for patient education. This survey of cancer genetic counselors assessed their use of educational videos and their recommendations for content of future videos. Thirty percent of respondents use videos for patient education. Cited benefits included reinforcement of information for clients and increased counselor efficiency. Of the 70% who do not use videos, predominant barriers included the perceived lack of an appropriate video, lack of space and/or equipment, and concern that videos are impersonal. Most respondents desired a video that is representative of the genetic counseling session, but emphasized the importance of using broad information. Content considered critical included the pros and cons of genetic testing, associated psychosocial implications, and genetic discrimination. The results of this exploratory study provide data relevant for the development of a cancer genetics video for patient education, and suggestions are made based on aspects of information processing and communication theories.     

Doctor's Expertise and Managing Discrepant Information from Other Sources in Genetic Counseling: A Conversation Analytic Perspective

The study examines a recurrent interactional pattern in genetic counseling. It describes clinical geneticists' responses in situations in which clients have presented information from other sources that is potentially discrepant with information given by the doctor. The data consists of 12 video-recorded sessions of genetic counseling in Finland, and the method is conversation analysis. There are two primary ways the doctors respond: either they accept the client's information as such, but show that it is not discrepant with the doctor's information, or they reject the client's information. In the latter case they mitigate the ‘wrongness’ of the client's information. The clinical geneticists seem to be working with a dilemma: they need to find a balance between ensuring correct understanding of the information and showing respect for the expertise of others. A particularly complex case is also analyzed and reflected on.     

Care of the Self and Patient Participation in Genetic Discourse: A Foucauldian Reading of the Surgeon General's “My Family Health Portrait” Program

Critics of genetic discourse are concerned that deterministic and discriminatory views of genetics are increasingly becoming adopted. These views argue that current genetic discourse becomes a source of power whereby powerful institutions harm people with so-called “bad” genes. This essay argues that current analyses of the power of genetics discourse are grounded in an improper reading that disempowers patients. Deploying Michel Foucault's concept “care of the self,” this essay claims that genetics discourse is better understood as a way that patients take on power through rhetoric rather than a force that has power over patients. Through a close reading of the “My Family Health Portrait” program, this paper argues that patients experience a process of “subjection” wherein they become agents of and objects of genetics discourse both. This alternative mode of analyzing the power of genetics discourse has implications for our collective understanding of the operations of the care of the self and the uses of genetic information that we propose.     

Differences in Individual Approaches: Communication in the Familial Breast Cancer Consultation and the Effect on Patient Outcomes

This multicenter study aimed to assess (i) whether individual clinical geneticists and genetic counselors vary in their communication skills and (ii) whether this variation in communication impacts on patient outcomes, such as anxiety, depression, genetics knowledge, and satisfaction. One hundred and fifty women from high-risk breast cancer families attending their first genetic counseling consultation completed pre and post-consultation self-report questionnaires. The consultations were audiotaped and transcribed verbatim. Univariate analyses showed highly significant differences between individual clinical geneticists and genetic counselors in: facilitating understanding (p 0.001); facilitating active involvement (p 0.001); facilitating partnership building (p = 0.003); addressing emotional concerns (p 0.001); and discussing prophylactic mastectomy (p = 0.017). Multivariate linear regressions showed that this variation in communication resulted in a greater change in patients depression 4 weeks after the counseling session (p = 0.017). These findings suggest clinical geneticists and genetic counselors have achieved some standardization in communicating information, but showed diversity in their facilitation skills. Communication skills may be a useful area to explore further in this field.     

Evaluating the Impact of Genetic Counseling and Testing with Signal Detection Methods

One measure of the impact of genetic counseling and testing (GCT) is the extent to which it fosters behavioral change that is consistent with mutation status. We describe and illustrate how two different signal detection methods, receiver operating characteristic (ROC) analysis and recursive partitioning, can be used in this context to evaluate the impact of GCT. We analyzed real screening behavior data obtained in the 12 months following GCT for Hereditary Nonpolyposis Colon Cancer (HNPCC) using these two different signal detection approaches. Each approach demonstrated that GCT had an impact on behavioral outcomes, and was effective in fostering behavioral outcomes appropriate to mutation status. The ROC approach demonstrated that GCT was effective because mutation positive and mutation negative individuals could be distinguished on the basis of the number of recommended screening behaviors. The recursive partitioning approach demonstrated that GCT was effective because there were generally high rates of adherence to screening guidelines among subjects. The recursive partitioning technique also identified four subgroups of subjects, each with distinct characteristics, for which tailored interventions could be developed to increase rates of adherence to screening guidelines. Signal detection methods are easily implemented and are useful techniques for evaluating the impact of GCT.     

Evaluating Genetic Counseling: Client Expectations,Psychological Adjustment and Satisfaction with Service

Periodic evaluations of genetic counseling services are useful for determining the effectiveness of counseling in meetings its psycho-educational aims, as well as identifying where improvements to the service may be made. This study aimed to evaluate the genetic counseling services provided by Genetic Services of Western Australia (GSWA) to determine the impact of counseling on client expectations, satisfaction with the service, and psychological adjustment, defined as wellbeing and perceived personal control (PPC). A total of 122 clients participated in a self-administered survey conducted pre- and post-counseling. Client expectations of the service as a means of providing information were met, and opportunities for counselors to meet client’s expectations of psychological support were identified. Furthermore, counseling was found to maintain and enhance psychological wellbeing of clients. The role of counseling in facilitating the development of PPC was a key contributor to a high sense of satisfaction in clients.     

The Nature and Significance of Behavioural Genetic Information

In light of the human genome project, establishing the genetic aetiology of complex human diseases has become a research priority within Western medicine. However, in addition to the identification of disease genes, numerous research projects are also being undertaken to identify genes contributing to the development of human behavioural characteristics, such as cognitive ability and criminal tendency. The permissibility of this research is obviously controversial: will society benefit from this research, or will it adversely affect our conceptions of ourselves and each other? When assessing the permissibility of this research, it is important to consider the nature and deterministic significance of behavioural genetic information. Whilst todate there has been much discussion and debate about the properties of genetic information per se and genetic determinism, this has not been applied to behavioural genetic research and its ethical implications. Therefore, this paper elucidates how behavioural genetic information can be distinguished from other types of genetic and non-genetic information and also synthesises the determinative significance of genetic factors for the development of human behavioural traits. Undertaking this analysis enables the ethical issues raised by this research to be debated in an appropriate context and indicates that separate policy considerations are warranted.

     

The Double Life of Double Effect

The U.S. Supreme Court's majorityopinion in Vacco v. Quill assumes thatthe principle of double effect explains thepermissibility of hastening death in thecontext of ordinary palliative care and inextraordinary cases in which painkilling drugshave failed to relieve especially intractablesuffering and terminal sedation has beenadopted as a last resort. The traditionaldoctrine of double effect, understood asproviding a prohibition on instrumental harmingas opposed to incidental harming or harming asa side effect, must be distinguished from otherways in which the claim that a result is notintended might be offered as part of ajustification for it. Although double effectmight appropriately be invoked as a constrainton ordinary palliative care, it is not clearthat it can be coherently extended to justifysuch practices as terminal sedation. A betterapproach would reconsider double effect'straditional prohibition on hastening death as ameans to relieve suffering in the context ofacute palliative care.